John’s story: “My life before and after transplant is like night and day.”

John didn't realise he had a liver condition until he was taken to hospital after a hypoglycaemic attack. He went on to have a liver transplant and now volunteers for the British Liver Trust. 

"Four years ago, when I was coming home from work, I had a hypoglycaemic attack and collapsed on the pavement.  A passer-by called an ambulance, and the paramedics wanted to take me to hospital, but I said I wanted to go home.  I’d been living with type 2 diabetes since the 80s and until then I thought that I had it under control.  I had a busy life as a chef, and it was coming up to Christmas, so I couldn’t be going to hospital!  A week later I collapsed again.  This time the ambulance took me to hospital.  They ran all kinds of tests and it turned out my liver was badly damaged.

"Life became a round of hospital appointments, and regular assessments as my health got worse.  I developed ascites – which is when the liver is scarred and fluid gets forced into abdominal cavity. The fluid then needs regular draining.  I would go to hospital and watch them drain the equivalent of nine big cola bottles of fluid from me!  I had a stent put into my liver and that helped a bit, for a while.  But by now I was unable to work – in fact I could hardly even walk 100 yards.

"Time on the transplant list was hard; ‘the waiting game’ is what I called it.  Six weeks after I was put on the transplant list I got the call to say the operation was going ahead and I was rushed into hospital. And then just as suddenly the operation was cancelled because the liver wasn’t as good as was needed.  It was almost a further year on the transplant list before a new liver was found for me. This happens to people a lot, and it’s devastating, but you must always stay positive.

"It was while I was at the Royal Edinburgh liver unit that I met Fiona, the transplant social worker, and she told me about the liver patient support groups run by Amy from British Liver Trust. There was one at the hospital at the same time as the liver clinic, and there was one in Falkirk – which was closest to my home.

"Going to the groups have been great.  I started going when I was pre-transplant and I met people who were also waiting on the transplant list, so they knew what it was like.  I met people who were post-transplant, so they could answer my questions and talk to me about what to expect.  Amy arranged speakers, like dieticians and people from Citizens Advice – then afterwards people ask all kinds of questions, and so many things are discussed.  We often start on one topic, but go off on a tangent, and it’s great.

"I had my transplant in February 2019. My life before and after transplant is like night and day.  I have my life back, thanks to my donor, and when my liver-anniversary came round in February 2020 I had a wee moment to myself thinking about my donor.

"I appreciate so much now, and want to give back in any way I can.  I find it easy to talk to people and Fiona and Amy saw this and said that I should think about being a peer mentor.  They encouraged me, and from there I became a volunteer on the hospital liver unit.

"Now, once a week, I visit the liver patients who are there for assessment, and I talk to them, and give them a pack of patient information from British Liver Trust.

"Everyone I meet is in a different place; some have family problems, some have financial worries. One lady had travelled a long way from a remote part of Scotland and had no visitors.  I was able to tell the hospital family support worker and he found accommodation for her husband so he could be there for her every day – and she really started to do much better after that.

"People ask me questions that they don’t have the courage to ask the doctors, because they think the questions are too silly. But there are no silly questions, and I’m just pleased to be in a position where I can help. People are always really pleased to get the information, and know that there is support for them, so they don’t have to face it alone."

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